Excluded: Sorry, it’s not your right

Recently there’s been one story after the next in the news about an autistic child, and about special needs children, being removed (physically, in some cases) from public spaces: A Minnesota church, more than one airplane, a kindergarten classroom. I’ve followed many of these cases on my autism weblog and the discussions that have emerged have often gotten long, and been more than heated—-they’ve been full of vitriol, hostility and disgust that parents of disabled children have so little regard for others’ safety and are, indeed, so seemingly careless of the needs of others.

Parents of disabled children do care very much; indeed they may be the most sensitive of all to how strangers feel when a child “misbehaves” in public. But being parents of kids who often don’t get understood, we have to take care—to advocate—for our kids. Experience has shown me that, at the end of the day, if my husband Jim and I don’t stand up for Charlie, people just walk by. In May, I wrote a post entitled Excluded: On Keeping the Faith about the daily advocacy a parent of a disabled child, and one’s disabled child, find themselves performing everyone we step into a public place and I’m reposting it here.

Exclusion of autistic individuals from public places has been under heavy discussion in the wake of a Minnesota priest filing a restraining order against the parents of an autistic 13-year-old, Adam Race. In a short essay at the start of the guide Autism and Faith: A Journey Into Community entitled “Open the Door,” Linda Walder Fiddle writes:

In 1993, when my son, Danny, was diagnosed with Pervasive Developmental Disorder (PDD) (that I later learned meant he was autistic), my first thought was not to run to my local synagogue for support………..

When I reflect back now I realize that the reason I did not look to my faith community for support was that I just couldn’t deal with the possibility of rejection. Quite frankly it was challenging enough to navigate the daily routines that required tremendous planning due to Danny’s unpredictable and frenetic behaviors and I did not feel at all that he could handle the requirements of religious worship. My defensiveness and protectiveness fueled the notion that if Danny would not be welcomed, the rest of the family would not be welcomed either. And so, our family never joined any faith community.

There were times, however, that I peered through the peephole of the door to my faith community but always my fears, real or imagined, kept me from opening it……..

I wonder if it is this fear of rejection, of being excluded, that too often leads parents of autistic children and autistic individuals, and individuals who are “different,” not to seek out communities and experiences that they still feel keenly drawn to. It is not simply that one’s child can’t do something (Little League, proms, Girl Scouts), but that it feels (I’m not saying that this is the case, but this is what it can feel like) as if a welcome mat had never been put out.

Here’s a slightly different case of exclusion: In Manteca, California, the therapy dog of 4-year-old Jayden Qualls, who also has autism, was not allowed on the schoolbus or at McFall Preschool, according to CBS news. It may be argued that the school is right to “exclude” the therapy dog, Houdini. The dog is said to help Jayden “with walking, staying alert and emotional outbursts,” according to Jayden’s mother—-Houdini helps Jayden to manage being in school better. Is excluding a therapy dog tantamount to excluding the autistic or disabled child who relies on him?

The answer depends on so many factors, not the least of which is what was it like for Jayden to be in school prior to having Houdini? From the discussion about Adam Race and the parish of St. Joseph’s in Bertha, Minnesota, I’ve been reminded about how tricky—-even perilous—it is to make generalizations about “situations,” about the needs, of autistic persons.

In regard to the Races’ case, I’m less concerned about who is right or wrong or who said what or did what or tried what than to move forward and think about how to best include autistic individuals in public settings, including religious houses of worship. I’ve been troubled to note the constant emphasis on Adam’s height and weight. I understand why people might be fearful of him and of his behaviors: My own son is taller, heavier, and stronger than me (and he just turned 11 years old). When he throws himself on the floor, I cannot pull him up. Therefore, I have long been learning about other, non-physical, non-violent ways to help him through tantrums, anxiety attacks, and the like. And I have also been learning about what these “behaviors” mean: Not simply that my son is “being bad” or “misbehaving,” but that he is trying to tell me something that needs to get said.

Charlie and a lot of autistic children are very attuned to non-verbal communication, including tone of voice, body language, and gestures. Charlie knows when someone is afraid that he’ll “do something. At these times, his teachers and therapists know they have to speak to him with a kind of calm and steady confidence that he’ll be all right. We have been extremely hesitant to leave Charlie with any but a few babysitters and only in settings where the staff is highly trained for these reasons.

I guess you could say it is a kind of spiritual discipline and I have not always maintained it in the heat of the moment. I know little about faith, but the belief that Charlie can get through a tough moment, that we can get through it with him, that Charlie can do it (walk, talk, ride a bike, say his name, get on a surfboard, play piano with both hands)—–it is this belief at these moments in which I feel how human and limited I am, that I experience something that is “faith” (or maybe not). And seeing Charlie’s feet move the pedals even as his eyes blink in surprise, or seeing his teacher and an aide smile in proud delight when he reads the sheet music as he plucks the cello strings—-I think this might be what is called grace.

Think I’ll just call it Charlie.

3 thoughts on “Excluded: Sorry, it’s not your right

  1. Thanks for a thoughtful and balanced view. Our experiences as parents of a 17-year-old with severe disabilities are much in line with yours. Most people are tolerant and many have been positively supportive. Many people who act a bit strange toward him or us are just uncomfortable because they don’t know how to act and are afraid of doing something “wrong.” Most young children are less inhibited and just ask “what happened to him?” or something like that but it is just honest curiosity without malice. Rarely there are nasty stares or comments and very rarely attempts to exclude. When it happens, it hurts, but it is more the exception than the rule.

  2. Sometimes I think I have too many worries about what people might be thinking. Thanks for sharing your experience—-vry hopeful.

  3. Self fullfilling prophecy!

    She thinks no one will accept her son (or her whole family), so she forces him and his intolerable behaviors unto everyone, throwing her weight around, calling the newspapers, and throwing herself onto the ground, throwing a temper tantrum, taking advantage of any opportunity to scream DISCRIMINATION, thusly alienating herself from everyone, and FORCING people to dislike her, causing people to refuse accepting her unbelievable, rude, arrogant, self righteous behavior just so she can say…HA, I TOLD YOU SO, I TOLD YOU THAT THEY WOULDN’T ACCEPT US!!!!

    I tend to understand a little better after reading your post on this subjuect. I actually think more people caught up in this firey, enraged debate should read what you just wrote right here. It’s people like Mrs. Race however that raise that sense of contempt in out hearts and souls. People like her who don’t take the time to make a sensible connection with those around her, but wish to impose their feelings and thoughts on others without doing the legwork of explaining herself as we all have to do if we want others to accept our extenuating circumstances. We all have to work to get others to understand our unusual circumstances as opposed to just expecting them to want to come and get as much as they can of something uncomfortable and unusual.

    Mrs. Race is a woman that is bound by contempt, fear, self rightousness, and ignorance; something that I could just see seething from her eyes and spewing from her mouth as she manipulated the truth and took advantage of those blood thirsty reporters looking for something racey and outrageous to exploit…and boy did she live it up. And at her own expense. Now there are even more people in this world who dislike her and her motives. She does it to herself, and she, just like her son, is throwing a temper-tantrum flailing all over the supermarket floor, kicking and screaming because she didn’t get her way! And that didn’t get her son very far in life…so why is she doing the same thing? She would do good to accept the simple fact that HER SON WILL NEVER FIT IN, STOP TRYING TO SHOEHORN HIM INTO EVERYONES LIFE, TRYING TO MAKE THEM ACCEPT SOMETHING THAT DOES NOT FIT!!!! It’s not their fault that she has a disabled son! But she’s too busy running around trying to tell everyone that it’s not her fault she has a disabled son, that she’ s making a mess out of everyone else’s life…thus becoming the outcast….it’s called self fullfilling prophecy…

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